Shahaduz Zaman PhD, Research Fellow, School of Interdisciplinary Studies, University of Glasgow, Dumfries, Scotland, explains the background to his article published in the July/August issue of the European Journal of Palliative Care.
Globally, there are very few examples of community-oriented end of life care in resource-poor settings. Among the 160 million inhabitants of Bangladesh, it is estimated that more than two million people are currently living in slums in the city of Dhaka. The number of slums in the city is believed to be over 9,000.
Similar to the situation in other developing countries, palliative care remains a major unmet need in Bangladesh.
The Centre for Palliative Care (CPC), in collaboration with the Worldwide Hospice Palliative Care Alliance (WHPCA), piloted a one-year project on homecare outreach palliative care service in the two slum settings in Dhaka, Bangladesh. The CPC is based at the only medical university, Bangabandhu Sheikh Mujib Medical University (BSMMU), in Dhaka.
There are enormous challenges in running a slum-based community palliative care project of this type, characterised by a highly mobile population, informal power structures, and high levels of uncertainty.
This project was taken forward through a community-driven, public health approach. Eight female volunteers in the community were trained to provide home-based palliative care, including physical, social, psychological and spiritual care to their patients. The volunteers were supported by doctors and nurses of CPC. In addition, a monthly food assistance package was provided to the project beneficiaries.
An independent research organisation in Bangladesh undertook an evaluation of this palliative care project under my supervision one year after inception. The evaluation was funded by a grant from the WHPCA. We found that in the context of extreme poverty, and a complete lack of health services, it became very difficult for the palliative care project to determine the inclusion criteria for the palliative care. However, despite the challenges, a total of 106 patients and their families benefited from the work. It was also found that the clients are highly satisfied with the services they have received. The community volunteers who were chased away by slum dwellers at the beginning of the project are now made welcome in people’s houses. As one respondent said:
“Both of us (husband and wife) are old now and there is no one to look after us. We take care of each other, but when both of us get sick, then there is no one left to take care of us in this shanty. Girls (Palliative Care Assistants) from the office visit our home regularly and look after us. They spend a good time with us, talk to us freely and we share our thoughts with each other. They are like family to us.”
The WHPCA’s support played a crucial role in implementing the project and is continuing its support onwards to the next stage of the project. Nevertheless, we think the sustainability of the project remains in doubt while it continues to depend on external resources.
Given this background, we are about to start a novel community engagement intervention in the slum, which will be delivered through community theatres and is being made possible with the support of an Arts and Humanities Research Council/Medical Research Council grant. I will be involved in this next stage as Principal Investigator, working with an interdisciplinary team based at the University of Glasgow, the non-governmental organisation BRAC, and local community engagement teams in Bangladesh.
In a country where almost all the available palliative care services have taken institution-based approaches, following western models, this community-based initiative in Bangladesh could serve as a public health model for palliative care in other resource-poor settings.
- The Glasgow End of Life Studies Group – aims to promote worldwide improvement in palliative care with research into end of life issues.
Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Palliative care for slum populations: A case from Bangladesh’ by Shahaduz Zaman, Nezamuddin Ahmed, Mamun Ur Rashid and Ferdous Jahan, published in the July/August 2017 edition of the European Journal of Palliative Care (EJPC). (vol. 24.4).
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